Advocate Illinois: Helping Deaf Americans Quit Smoking

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Advocate Illinois: Helping Deaf Americans Quit Smoking

Ms. Dedra Gates is a forty two-year-old deaf woman living in the Chicago area who has smoked since she was seventeen. Her parents put her in a hospital for behavioral problems when she was a teenager. Dedra did not have easy access to a therapist fluent in American Sign Language so hospital staff permitted her to smoke cigarettes to help her manage her feelings. “I was angry and I couldn’t really express myself and it felt good to smoke,” she recalled. “It didn’t take long for me to get hooked.”

Like most deaf Americans, Dedra lacked access to basic health information which hearing people take for granted. Ninety percent of deaf children are born into hearing families, and most of those families do not become fluent in American Sign Language (ASL).^[1] Most deaf people are very fortunate if their physician is fluent in ASL or employs an interpreter. Often a less than fluent family member plays this mediating role, and this lack of direct communication keeps deaf people in the dark on basic health knowledge. Based on the data collected by the National Center for Health Statistics in 2000-2006 through the National Health Interview Survey, among adults aged 18-44 years, more than 40% of those who were deaf or had a lot of trouble hearing currently smoked cigarettes compared with 24% of those with good hearing.^[2]

Dr. Toby Perlman, an ASL-fluent licensed psychologist, has directed the multi-faceted behavioral health program in the Deaf and Hard of Hearing Program at Advocate Illinois Masonic Medical Center for the past 11 years. She saw a glaring need to implement a smoking cessation intervention specifically tailored for the deaf and patients like Dedra.

ASL is a unique language with its own grammar and syntax, and is not a simple word to gesture translation of English. English comprehension among the deaf is akin to being bilingual, and the average deaf high school senior reads English at a fourth grade level.

“Imagine being a child growing up in a family with whom you can’t really communicate,” said Dr. Perlman. “You lose out on all the information that gets shared on the TV or radio, or just sitting around the dinner table talking. If you take away the information that we gather about our health through hearing and through reading, it really limits accessibility to healthcare information, including what happens if you smoke and how to stop smoking.”

Dr. Perlman’s research showed that no formal smoking cessation curriculum existed nationally specifically targeting deaf people who communicate using ASL. A successful intervention for any cultural minority must meet unique learning preferences and cultural values. A grant from the American Legacy Foundation allowed her to design a culturally tailored, Web-based streaming video screening tool and smoking cessation intervention for this underserved community. 

ASL relies on demonstration rather than description and deaf people rely on manual storytelling to communicate. The language is expressive and animated.  The curriculum Dr. Perlman developed reflects all of these characteristics, and even any accompanying handout materials are mostly pictorial rather than English based. Dr. Perlman is a hearing woman but she wanted all the actors in the videos to represent the deaf community.  Since there are some English concepts that are difficult to translate into ASL, she worked closely with the deaf actors to decide how best to present the information in ASL. Dedra has found the videos effective. “They appeal to both young people and old people and people with different levels of intelligence,” she said. “I’m not very technologically advanced, but the videos are easy to understand.” Dedra suffers from depression, heart disease, and diabetes, but she credits the video intervention with helping her lessen her smoking and learn more healthy habits to avoid the urges. “The best thing for me is to work and stay active,” she said. She plans to go back to school in the spring and take photography classes.

Dr. Perlman designed the video intervention to be used in a group setting, but she found her patients often do not understand the benefit of how a support group is helpful for stopping smoking. “They love getting together socially, but there have been so few situations for a lot of them to get group support,” she said. “If you always think you have to do things on your own and then someone offers something where you do it with other people, there needs to be a bit of education about the benefits of that.”

Isolation can be an issue for many deaf people, and assembling an in-person group session can be challenging. “There is no such thing as

a deaf neighborhood,” said Dr. Perlman. “For a lot of ethnic and racial groups, usually you can set something up in a certain neighborhood and know that you will get a high number of people who might be interested. But deaf people are scattered all over.”

While setting up the groups, Dr. Perlman found that recruitment was a real challenge, not because of lack of interest, but because it was difficult to find a time and place where people could meet. Dr. Perlman is currently developing a sign language chat room to accompany the online component where patients will be able to access the group by videophone. She also hopes to get a training session online as well, so that deaf professionals across the nation can begin to facilitate these smoking cessation intervention groups.

The Web-site has been received enthusiastically by the Deaf national community, and dissemination of the site has been rapid and broad. “The Deaf community is very tightly knit even though it is spread out,” said Dr. Perlman. “There are so few resources out there that they get very excited when there is anything new.”

Dedra tried to quit several years ago, but could never stay with it. The ASL based video intervention has clicked with her like nothing she has tried before. “I am motivated now,” she said. “The doctor says I could lose my leg from the diabetes and I have a higher risk of stroke because of the smoking. I want to take care of myself. I am really scared, and I don’t want to see my health go down the drain.”